Friday, April 25, 2008

This was not a good day for Kelly. She had one of her roughest chemo days ever. It started out good, we got to go to the new (just opened this week) Infusion Center. It is very nice, and if I hadn't forgotten my camera at home, I would post some pictures. Next time. Then she did have a "Three Dog Day." This morning, there were three therapy dogs that came to the infusion center, so Kelly had a nice morning with a dog on her lap most of the time. She is very happy when she has a dog on her lap. But the bad news was that the accupunturist that usually treats Kelly with accupressure for her nausea was out sick today. Which means Kelly was also sick today - she really had a rough time and went through a lot of buckets.

Kelly was in the Dana Point Times today for Relay for Life. Here is a link to the article.

http://www.danapointtimes.com Then click on "Relay for Life Biggest Ever" under This Week (photo changes - watch until it come to the Relay title.) The other girl with Kelly is Ashley Diemer, Chloe's oldest sister who is Kelly's age.

We have a big event coming up next week. Kelly was nominated by our church to go to Lourdes, France with a group called the Order of Malta. They chose a group of 50 out of 150 applications and Kelly was chosen. We are leaving next Tuesday - Just Kelly and I are going. Some of you have probably heard the story of what happened in Lourdes in the 1850s. Many believe in miracles that happen in Lourdes. We don't count on miracles, but we don't pass any possiblities. And no matter what, it will be an amazing and spiritual trip for both of us. It will be very busy - since it is a group trip, it is very scheduled and full. We may need a vacation when we get back. Unfortunately, Kevin will be in Thailand when we get back. He is doing a military exercise there with the Marine Reserves. But it is only for a few weeks this time. Thanks once again to the Elliotts and Schultes for helping us with Megan and Shannon while we are gone. Megan and Shannon also have a dance competition in Burbank while we are gone. Kelly and I will be back on May 7th and I will write a lot more about our trip then.

Monday, April 21, 2008

We had an amazing Relay for Life weekend. This was the first year we have participated in this event because we wanted to do something to fight back against cancer. We really want to thank everyone who donated and those of you who joined us and helped make it such a great weekend. We did as well as we did because of all of you! We can't thank you enough. For those of you who missed the awards Sunday morning, TEAM KELLY won Top Fundraising Team, Best Team Spirit, and Rookie Team of Relay.

Thanks, Pat, for the Ice Cream Ball you sent Kelly! It arrived the day before Relay (perfect timing!) and we took it with us. It did many laps rolling along the ground and made delicious ice cream at the same time.

Many people stopped and told us they were inspired by Kelly and Chloe. Chloe is a good friend of ours that we met at CHOC that has been fighting Leukemia. Her family has been involved in Relay with us from the beginning. We are so thankful to have gotten to know the Diemer Family so well. Her sister, Ashley, made the signs you'll see in the photos below. We were really touched by all the people that came to Relay during the weekend. Thank you to the Sodaro Family who showed up even before we did in the morning to help us set up. Katie, we are so glad you came and received your 9 strands of survivor beads! The survivors received one strand of "victory beads" for each year since diagnosis. Katie is only 15 and had 9 strands of beads! You are an inspiration to us! Thanks, Trina, it was so good to see you there, and we loved your caregiver sash at the clinic today!

I will let these pictures help tell about our wonderful weekend. Our camera did not work the whole weekend, and I missed a lot of good shots - if anyone has good photos, can you send them to us? Thanks Schultes! Some of these are sent from them.

Kelly and Chloe holding a team sign after their opening survivor lap.

Megan and Kelly with Brooke, a good friend of Shannon's.

Our team site - our green easy up is in the right background with the gold stars. It is hard to see, but the blue under the red easy up is the ocean!

It is hard to see, but all the gold stars have pictures of kids fighting or kids who have fought cancer. So many people were moved when they stopped at looked at all the kids on the stars. Gold is the color for Childhood Cancer, so we have lots of gold!

This is how the stars looked close up. (Notice the one on the right, Michelle!)

Kelly, Ashley and Austin in the Crazy Hat Lap. The different themed laps kept it fun.

Chloe and Kelly were given these handmade butterflies by another team.

They were the only children that were survivors in the survivor lap.

Once again, ocean in the background through the trees.

Jackie and Kelly

Chloe, Shannon and Brooke

One of Kelly's luminary bags

The luminaries were kept lit the entire night. Each bag is in honor of someone fighting cancer in memory of someone who fought cancer. It was a moving sight.

Tuesday, April 15, 2008

Kelly had her 12th course of this chemo yesterday. It wasn't quite a three bucket day, but close. She still has a hard time with the Irinotecan. The one thing that was better for her was when we got home she seemed to feel better than usual. She is doing really well today too. Her wonderful nurse, Trina, ran her hydration longer after her chemo, and that seemed to really help. So thanks so much, Trina. Kelly has never been so perky the day after chemo.

It was one year ago today that Kelly had her seizure. We are actually thankful that she had it, since it led to CTscans and the MRI that might not have happened so fast. It is hard to believe that this journey started a whole year ago. Kelly has been through so much since then, and has grown up so much faster than she should have to (so have her sisters.)

Our Relay for Life is this weekend! We are busy getting everything ready. All of us, especially the girls, are really looking forward to it. For our first year, our team has done well raising money for the American Cancer Society. I found out at our meeting last night that if we raise a certain amount of donations, we can designate where we want our money to go (what kind of cancer research) That was good news, since childhood cancers to not get nearly as much research funding as adult cancers.Thank you so much to everyone who has joined us or donated. It isn't too late if you would still like to donate!TEAM KELLY website: http://main.acsevents.org/goto/kellylaude

Sunday, April 13, 2008

I forgot to say in the last post that we did get Kelly's chemo rescheduled from Friday to Monday, so she will be going in tomorrow to have have her labs checked, then chemo. She was very happy not to have chemo on Friday, since it makes her so tired for a day or so, and she really wanted to enjoy this weekend. She is feeling pretty good, and is still breathing a sigh of relief over her latest MRI. (OK, she'll say that's me. She says I am the only one that worries about those!)

Friday night we all went to "Matrimonial Mayhem" - a murder mystery dinner at the girls' high school. We were supposed to be guests at a wedding and of course someone is killed and we have to figure out who did it. The high school kids did a good job putting it on and everyone had a lot of fun. Many of Kelly's friends were there and were very happy to see her. Kelly even caught the bouquet, but hasn't been to enough weddings to realize that means some man is going to put a garter on her leg in front of everyone. She was a good sport though, even though she was embarrassed.

Saturday evening, Kelly had a special event at Dave and Busters in Orange called "It Can't Own Me" for teens with cancer from her hospital and one other hospital. There was food, some of her doctors and clinic staff were there, a comedian that was a cancer survivor, and then they made videos that will be posted on You Tube. The photo above is Kelly and Shannon making their video. Kelly was interviewed by herself first about what her life has been like, good and bad, since she was diagnosed with cancer. Then Shannon did a little talking too about what is was like to have a sister with cancer. I think these will be put on You Tube in a couple weeks. I will let everyone know as soon as I hear.

Today Kevin took all three girls horseback riding in the Hollywood Hills with their Trailmates Group (a father daughter group through the YMCA.) They had a lot of fun, even though it was very hot here today. I will end this post with photos from today.

Wednesday, April 9, 2008

We received wonderful news this morning. Kelly's MRI is clear! Thanks for all the prayers for her - they really helped. Thanks for driving us up, Linda, I do better with moral support for MRI days. Kevin stayed home to get Megan and Shannon to school. We had a good morning, starting with an early MRI that went very smoothly. The new outpatient MRI center at the St. Joseph Pavillion is so nice with their new machines.

Then we walked over to the hospital across the street so we could meet with Dr. Muhonen to review her results. Kelly's fourth grade teacher, Clare Reding, takes one of her twin girls to see Dr. Muhonen too, so we had back to back appointments today. Kelly was very excited to have Clare and her girls with her at Dr. Muhonen's office. We all shared the turtle room. (I've posted pictures on here from that room in February - it is his biggest room, right beside the computer where the MRIs are viewed.) Dr. Muhonen took a look at Kelly's MRI, then called Kelly out to look at it. (I was not invited - this was just between him and Kelly) Kelly looked so happy when she came in, I didn't have to ask what the MRI looked like. She has been smiling ever since. I did get to see the MRI, and all of you get to see it too! I posted it below, which is our perfect picture! This is the best MRI she has had since her recurrence in October. No enhancement at all for the first time! As always, we know not to take this beautiful MRI for granted. Glioblastoma can recur (and almost always does) at any time. But at least for now, we are very happy and relieved. As Dr. Muhonen told me as we were leaving, "Just enjoy each day." She will have another MRI in 8 weeks. We all celebrated with lunch at In and Out, which is currently Kelly's favorite place for lunch. We will be at Claim Jumper tonight, Heather, for the Leukemia Lymphoma Society fundraiser. The celebration continues!

You can see the empty space in the lower right quarter of her brain, which is actually the left parietal occipital lobe. The empty black is the old tumor bed. There has always been a little bit of enhancement close to it, (the contrast that is injected through her port during the MRI highlights anything unusual that shouldn't be there.) It is our prayer that this picture stays just like this. Once again, thanks to everyone who has been so supportive to Kelly and all of us.

Monday, April 7, 2008

After a rough chemo day last week, Kelly has been feeling good. She has a busy week at CHOC this week. Tomorrow she has an appointment at the oncology clinic to see her doctor and have labs checked.

Then the big thing this week is her MRI. It was originally scheduled for Wednesday afternoon, but the Neurosurgery office called saying Dr. Muhonen was going to be out of the office that afternoon and needed to reschedule her. Since I really wanted to see him right after her MRI, his office called and rescheduled her MRI for the morning, then moved her appointment to the morning, so we could still come see him right away to go over the results with him. Thank you so much Yolanda! Prayers for a clear MRI are much appreciated!

Friday she has a chemo treatment all day. (Unless I can reschedule it to Monday, so she can enjoy some events she has coming up this weekend!) We'll see what her oncologist says in the clinic tomorrow!

Tuesday, April 1, 2008

Another chemo day over with. Kelly decided she liked doing labs and chemo on the same day. Her chemo is count dependent, so they don't give it to her unless her blood counts are at certain levels. That means she has to have labs done before chemo. We have always gone to the clinic the day before chemo for labs. Yesterday, we went to the clinic early for labs, then we went out to breakfast while we waited for the results to come back. Then we went back, and by that time, the clinic was really crowded - it was quite a busy day there. We had to wait to get back into a room. Hopefully this will get better when they open the new infusion center later this month. But once they got her back there, they got her chemo going pretty quickly (thanks for that, Lori!) We actually ended up leaving at about the same time as usual. The only bad thing was, since we started chemo later than usual, Kelly didn't get the little seeds taped on her pressure points. We realized what a difference it makes. In the photo, Kelly has a bucket on her head (this was after she had her ativan, the anti nausea drug that makes her a bit silly.) The bucket didn't stay on her head, since it's real purpose is for when the kids get sick. She went through a couple of them yesterday at the clinic, and another when we got home. (We have them in almost every room of our house and the car. Other cancer families will understand this!) Next time, we have to make sure she gets the seeds!

Kelly is so wobbly when by the time she gets done with her chemo, we use a wheelchair to get her to the car. Yesterday, she didn't want any help getting herself to the car. (She really likes the ramp into the parking garage!) Thanks for bringing us lunch, Linda! That is greatly appreciated and so is your company.

Thanks again to everyone who has helped with the American Cancer Society's Relay for Life by donating or joining our team. I also appreciate the photos I have been getting of other kids fighting cancer and those who have fought and are now angels. Hopefully our team will make an impact on everyone there on how many kids are affected by this disease.TEAM KELLY website: http://main.acsevents.org/goto/kellylaude

There is one more photo I meant to post from our week in the mountains. One of the things I appreciated most about our trip was our girls spending time with each other without the normal things that usually keep them apart like school, activities, and different friends. This photo shows the three of them just appreciating each other's company.

Kelly's next MRI is a week from tomorrow, April 9th. We are praying for another clear scan. It is still nerve wracking to me as we get close to MRIs as we know this nasty tumor can recur at any time. We are trying to think positive though! Thanks for everyone who remembers Kelly in their prayers. It really is helping and we appreciate it so much. Thanks also to all of you for the prayers for Kasey and Katherine also.

Kelly's Story

Kelly was diagnosed with a grade 4 glioblastoma multiforme (brain tumor) in July, 2007. She had surgery to have the tumor removed at Children's Hospital of Orange County in Orange, California. After one round of radiation and chemotherapy, she had another surgery to remove a recurrent tumor on October 22. She is receiving further treatment to try to prevent another recurrence. This website is to keep friends and family updated on her journey and her progress. She loves to read comments posted here for her!

Treatment Plan8/07 - 9/07 30 days radiation along with 42 days of oral temodar. Her first post radiation MRI showed recurrence of her tumor, so this treatment was changed.

11/16 Gamma Knife Radiosurgery - attempt to create a "boundary" to contain cancer cells to the one area of her brain

11/07 to present Irinotecan (also known as CPT-11) and Avastin given every other week

Leave a message for Kelly...

A big thank you to everyone who has posted messages to the blog. Kelly checks them everyday and it means so much to her to hear from all of you and know you are thinking of her. It really makes her happy to know so many people are cheering her on.

If you'd like to post a message and aren't sure how, go down to the bottom of the post that you would like to add a comment to and click on comments. If someone has already posted a comment, you will also see a number telling how many people have commented. Then login or create a new account, which is easy. You just need a name and password. If you post under "anonymous" please remember to sign your name so we know who it is from.

If you click on anonymous, you don't have to have an identity or password, so that may be easier!